Amy's story

Amy

Care is very personal, especially healthcare. But healthcare professionals can often think that they are the experts. In reality, we are the experts in our own healthcare, and similarly our own lives.

Having control allows you to have purpose in your life. That’s what make your life belong to you. If you don’t have any control in your life, everything’s happening to you. All these professionals, they had decided everything and my opinion was of no importance, it didn’t matter what I felt. That’s the time when you need to be being involved.

Now, it’s completely different. I have such a great relationship with my paediatrician. She understands what’s important to me. She was starting to notice that I would bring a piece of paper and have all my notes written down about what I wanted. She used to kind of say ‘what’s important to you, what do you want to come out of it?’, and then we would work together to play more of an central role in my care.

Rather than the treatment happening alongside me, the treatment is part of my life. Nearer the beginning I would have an exercise sheet given to me and it would tell me what physio I needed to do. Whereas now I play more of an active role and put it into fun ways of doing it, so it’s not just sitting and stretching, it’s actually an exercise like playing with the dog.

Being involved motivates me to want even more involvement in my care. It’s changed from feeling like my health was controlling me, to now I’m controlling my health - I decide who makes the next move.

What do NHS staff say?

I think one of the things I have found as a health professional is that quite often there's a danger that health professionals will talk to the parents of children and young people and it can often be that the parents have a different viewpoint from their children and young people. And I think that if the children and young people know their rights then they have a better chance of getting them heard and knowing possibly that they can go to their GP on their own, or go to a clinic or something on their own without actually having to have the parent and knowing about, that they will be heard in their own right rather than being the child of X, Y and Z.

Children in care

If you are under 16 and the Local Authority has Parental Responsibility for you then the NHS might want to get consent from a social worker before giving you any treatment.If you are over 16 then you should be able to give consent yourself, but the NHS might still want to get consent from a person with delegated responsibility in your Care Plan.

You can talk to NHS staff about making decisions yourself and how they can help you to do this.

What about mental health

You have the right to make decisions about your mental health, but if the NHS thinks that your mental health condition means you can't make a decision or that you are in danger it may decide to give you treatment without your consent.There are rules about how this happens to make You can find out more about these rules here

If you disagree with the NHS about making a decision you have the right to make an appeal. You can appeal to hospital and to an independent Mental Health Review Tribunal, which is like a special court.You can find out more here.

What about my parents and carers?

The NHS promises your mum, dad or carers can help you make decisions if you want them to, but the NHS should make sure this is your choice. It is up to you to decide about your care.

Sometimes NHS staff might think you don’t understand enough to make a decision about your health. They might ask your parents to decide what is best for you. If people can’t agree about what is best then a court will decide. There are rules about how this happens to make sure any decision is always in your best interest.